[Senate Hearing 113-801]
[From the U.S. Government Publishing Office]


                                                       S. Hrg. 113-801

                 RENEWING THE CONVERSATION: RESPECTING
               PATIENTS' WISHES AND ADVANCE CARE PLANNING

=======================================================================

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                    ONE HUNDRED THIRTEENTH CONGRESS


                             FIRST SESSION

                               __________

                             WASHINGTON, DC

                               __________

                        WEDNESDAY, JUNE 26, 2013

                               __________

                            Serial No. 113-7

         Printed for the use of the Special Committee on Aging
         
         
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]         


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                       SPECIAL COMMITTEE ON AGING

                     BILL NELSON, Florida, Chairman

RON WYDEN, Oregon                    SUSAN M. COLLINS, Maine
ROBERT P. CASEY JR, Pennsylvania     BOB CORKER, Tennessee
CLAIRE McCASKILL, Missouri           ORRIN HATCH, Utah
SHELDON WHITEHOUSE, Rhode Island     MARK KIRK, Illinois
KIRSTEN E. GILLIBRAND, New York      DEAN HELLER, Nevada
JOE MANCHIN III, West Virginia       JEFF FLAKE, Arizona
RICHARD BLUMENTHAL, Connecticut      KELLY AYOTTE, New Hampshire
TAMMY BALDWIN, Wisconsin             TIM SCOTT, South Carolina
JOE DONNELLY Indiana                 TED CRUZ, Texas
ELIZABETH WARREN, Massachusetts
                              ----------                              
                  
                  Kim Lipsky, Majority Staff Director
               Priscilla Hanley, Minority Staff Director
                                CONTENTS

                              ----------                              

                                                                   Page

Opening Statement of Chairman Bill Nelson........................     1
    Prepared Statement...........................................    10
Opening Statement of Ranking Member Susan M. Collins.............     1
    Prepared Statement...........................................     4
Statement of Senator Ron Wyden...................................     7
Statement of Senator Mark Warner.................................     8
Statement of Senator Joe Donnelly................................     9
Statement of Senator Elizabeth Warren............................    11

                           PANEL OF WITNESSES

James Towey, Founder, Aging with Dignity and President, Ava Maria 
  University.....................................................    12
Harriet Warshaw, Executive Director, The Conversation Project....    23
Amy Vandenbroucke, Executive Director, National Physician Orders 
  for Life-Sustaining Treatment and Paradigm Task Force..........    29
Gloria Ramsey, RN, Associate Professor, Uniformed Services 
  University of the Health Sciences..............................    44

                                APPENDIX
        Prepared Witness Statements and Questions for the Record

James Towey, Founder, Aging with Dignity and President, Ava Maria 
  University.....................................................    15
Harriet Warshaw, Executive Director, The Conversation Project....    25
Amy Vandenbroucke, Executive Director, National Physician Orders 
  for Life-Sustaining Treatment and Paradigm Task Force..........    32
Questions submitted for Ms. Vandenbrouck.........................    68

                  Additional Statements for the Record

Prepared statement of Senator Sheldon Whitehouse.................    59
Robert Fine, MD, FACP, FAAHPM, Clinical Director, Office of 
  Clinical Ethics and Pallative Care, Baylor Health Care System..    77
Ashley Carson Cottingham, Director of Policy and Advocacy, 
  Compassion and Choices.........................................    82

 
                       RENEWING THE CONVERSATION:.
                      RESPECTING PATIENTS' WISHES
                       AND ADVANCE CARE PLANNING

                              ----------                              


                        WEDNESDAY, JUNE 26, 2013

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 2:04 p.m., in 
Room SD-124, Dirksen Senate Office Building, Hon. Bill Nelson, 
Chairman of the Committee, presiding.
    Present: Senators Nelson, Wyden, Whitehouse, Blumenthal, 
Donnelly, Warren, Collins, and Ayotte.
    Also present: Senator Warner.

       OPENING STATEMENT OF SENATOR BILL NELSON, CHAIRMAN

    The Chairman. Good afternoon. We have established a new 
kind of procedure here. Sometimes, we give opening statements. 
Sometimes, we do not. Sometimes, I turn to the most junior 
members of the committee.
    [Laughter.]
    And I am going to have Senator Collins start out and then I 
will make some comments.

              OPENING STATEMENT OF SENATOR COLLINS

    Senator Collins. First of all, thank you, Mr. Chairman. 
This is typical of how gracious you are and the bipartisan 
manner in which we jointly run this committee, even though you 
are the Chairman and I always recognize that fact.
    I want to thank you for calling this hearing to discuss the 
importance of advanced care planning and to examine ways to 
improve how we care for people at the end of their lives. These 
are critical issues that at some point will confront each and 
every one of us and I commend the Chairman for focusing the 
committee's attention on them today. These issues also have 
long been of personal interest to me. One of the first bills 
that I introduced as a new Senator was called the Compassionate 
Care and Planning Act, and I introduced it with Senator Jay 
Rockefeller way back, I think, in the late 1990s.
    Noted health economist Uwe Reinhardt once observed that 
Americans are the only people on earth who believe that death 
is negotiable. Advances in medicine, public health, and 
technology have enabled more and more of us to live longer and 
healthier lives. When medical treatment can no longer promise a 
continuation of life, however, patients and their families 
should not have to fear that the process of dying will be 
marked by preventable pain, avoidable distress, or care that is 
simply inconsistent with their values and their needs.
    Unfortunately, most patients and their physicians do not 
currently discuss death or routinely make advance plans for 
their end-of-life care. As a consequence, about one-quarter of 
Medicare funds are spent on care at the end of life that is 
geared toward expensive high-tech interventions and rescue 
care. While most Americans say that they would prefer to die at 
home, studies show that the vast majority still die in 
institutions, where they may be in pain and where they may be 
subjected to high-tech treatments that merely prolong their 
suffering.
    We are making some progress in meeting the wishes of those 
at the end of their lives. More people over age 65 are dying at 
home and in hospice care and fewer are dying in hospitals, and 
I want to make clear that for some people, dying in the 
hospital is the right choice and the right option. But we 
should be respecting individuals' wishes.
    At the same time, a recent study published by the Journal 
of the American Medical Association found that end-of-life care 
continues to be characterized by aggressive interventions. 
Increasing numbers of patients are receiving care in an 
intensive care unit in their last month of life, and a growing 
number are shifted back and forth between different care sites 
in their final three months.
    Moreover, while the study found that hospice use has 
increased, more than 28 percent of hospice patients were 
enrolled for three days or less. I was astonished by that 
statistic, because I always thought hospice was supposed to be 
for the last six months, not the last three days.
    Clearly, there is more that we can do in this country to 
improve the way that we care for people at the end of their 
lives. Advance care planning has been shown to increase 
satisfaction not only for the person who is dying, but for the 
family members, as well, and it improves health outcomes 
because people with advance directives are more likely to get 
the care that they want in the setting they prefer and avoid 
the care that they do not want.
    Still, while 93 percent of Americans say that advance care 
planning should be a priority, only about a third of us have 
completed an Advance Directive.
    I mentioned the bill that I introduced in 1997 with Senator 
Rockefeller. It was intended to facilitate the discussions 
about end-of-life issues with physicians and other health care 
providers and encourage advance care planning. It required that 
every Medicare beneficiary receiving care in a hospital, 
nursing home, or other health care facility be given the 
opportunity to discuss end-of-life care and the preparation of 
an Advance Directive with an appropriately trained 
professional. It also required that if the patient had an 
Advance Directive, it must be displayed in a prominent place in 
the medical record so that everyone caring for the person could 
clearly see it. And last but certainly not least, it provided 
Medicare coverage for advance planning consultations between 
patients and their physicians.
    Mr. Chairman, patients and their families should be able to 
trust that the care that they receive in their final days is 
not only of high quality, but also consistent with their 
values, their wishes, and desire for autonomy and dignity. This 
issue, I know, has been a high priority for you, Mr. Chairman, 
for many years, as well. And again, thank you for calling this 
important hearing.
    [The prepared statement of Senator Collins follows:]
    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT] 
    
    The Chairman. Senator Wyden.

               OPENING STATEMENT OF SENATOR WYDEN

    Senator Wyden. Thank you very much, Mr. Chairman. Like 
colleagues, I am under the gun, but Senator Warner was here 
before me.
    Senator Warner. Please go ahead.
    Senator Wyden. Are you sure?
    Senator Warner. I am not even on the committee. He is 
letting me come.
    Senator Wyden. Oh, my goodness. Well, first of all, let me 
thank you, Mr. Chairman and Senator Collins, for your good work 
on this issue. This is about making sure that our people have 
all the choices they want, that they can get the services they 
need when they need them. And I think it is important to set 
out right at the outset that the good and bipartisan work that 
Chairman Nelson and Senator Collins are doing is the opposite 
of rationing. This is the opposite of rationing. They are 
expanding services to vulnerable people and I commend them for 
it.
    Mr. Chairman, if I could, I just would like to introduce 
briefly--we have got an Oregonian here who is part of a 
pioneering effort. She is the leader in Oregon but also the 
national leader of a very important program called POLST, and 
it stands for Physician Orders for Life-Sustaining Treatment. 
Ms. Vandenbroucke is here to tell the committee about POLST, 
which is an approach to make sure that we can again emphasize 
the wishes of the patient, that the patient is in the driver's 
seat in order to get the kind of care that they deserve.
    It is a holistic method of planning for end-of-life care 
and also incorporates a specific set of medical orders that 
ensure that the wishes of the patients are being honored. And 
as we will hear from Ms. Vandenbroucke, it also helps to expand 
conversations with family members and patients and others so 
that everybody is trying to think through what kinds of options 
and the extent of care they would like in various kinds of 
situations.
    And as a result of those conversations, patients can elect 
to create a POLST form, which translates their wishes into 
actionable medical orders. The form assures that professionals 
are going to provide only the treatments that patients 
themselves wish to receive and are in keeping with the goals of 
their program.
    Ms. Vandenbroucke has a J.D. from DePaul, her undergraduate 
degree from Bucknell. We are very glad you are here.
    I will only close by way of saying, Mr. Chairman, I think 
it is particularly timely that you are looking now as we think 
through what the next steps are in health reform. I was very 
pleased that as part of the Affordable Care Act, we were able 
to get something included that, for the first time, people who 
sought hospice care would not have to give up the option of 
curative care. Again, the opposite of rationing.
    So I just commend you, Mr. Chairman, and appreciate your 
letting me sort of parachute in here for a few minutes to make 
an opening statement, and Ms. Vandenbroucke, we are very proud 
that you and the POLST program are being featured today and we 
thank you, Mr. Chairman.
    The Chairman. And, Ms. Vandenbroucke, you realize that your 
Senator from Oregon is the next Chairman of the Senate Finance 
Committee.
    Ms. Vandenbroucke. I did not. Thank you.
    The Chairman. Senator Warner.

              OPENING STATEMENT OF SENATOR WARNER

    Senator Warner. Well, thank you, Mr. Chairman and Ranking 
Member Collins. I also appreciate the courtesy.
    I am not a regular member of the Aging Committee, but feel 
this is one of the most important issues we have got to 
address. I have tried to address it as a Governor and as a 
Senator, but also as a son in a family where my mom had 
Alzheimer's for ten years. The last nine years, she did not 
speak. And our family did not grapple and do it right and we 
know the anguish that particularly my father and my sister, who 
were there 24-7 as caregivers, went through as we went through 
her final days.
    I want to pick up where Senator Collins' comments were, 
because we are very much dovetailing that 93 percent of 
Americans who say advance planning ought to be part of our 
health care system. And what I also emphasize with Senator 
Wyden is this is not about rationing. This is about expanding 
options and honoring people's choices.
    And picking up again where Senator Collins is, during the 
last two Congresses, I have had legislation, the Senior 
Navigation and Planning Act, which helped to try to grapple 
with a lot of the very same issues. How do you get that 
consultation? How do you make sure directives are honored 
across State lines? How do you rationalize something that is 
still a patchwork?
    This year, I have been working with my colleague and good 
friend Senator Johnny Isakson from Georgia, where we are 
reworking and revising the language, and we are not quite ready 
yet, but we do hope in the next couple of weeks to introduce 
the Care Planning Act, changing the name, as well. And echoing 
what everybody has said, it is to align the care people receive 
with the care they want, no more and no less. The Care Planning 
Act is not going to try to fix all the challenges of advanced 
illness care but has targeted an effort that people, I think, 
will most benefit from, which is a planning process for people 
with advanced illnesses.
    These are the people who have the greatest need to, one, 
just understand their disease and what the potential outcomes 
and timelines are; think about their goals, values, and 
preferences, not only with medical professionals, but 
oftentimes with their faith leaders; three, choose in that 
setting with that consultation the care options that reflect 
their goals, values, faith, traditions, and preferences. And 
then, when they have made that choice, to find a way to 
document that plan, and that, again, we have an enormous quilt 
work of even the term ``advance directive'' is only a partially 
used term in terms of different States do not even have that 
terminology.
    This legislation will also shore up the Patient Self-
Determination Act by requiring providers to provide qualified 
assistance to individuals who want help and by requiring 
discharge planners to assure that that care plan travels. Too 
often, we have somebody who may have had some advance directive 
in one State, but family members or others, they end up in a 
hospital in another State and their wishes are not respected. 
Some of the most fascinating conversations I have had at some 
time have been with hospital system operators, and you get them 
in a closed room and they will acknowledge that this is not 
handled in an appropriate way.
    I remember, as well, before I close here, that I had a 
series of meetings with faith leaders, and I remember one 
minister at one point saying, acknowledging that they were 
pretty good about the business of taking people through life 
and they were pretty good about people in the afterlife, but 
they did not really have a very good job of taking people 
through the transition. So we do think--at least I believe--
that faith leaders have an important role to play.
    So I want to again thank the Chairman and the Ranking 
Member for holding this important hearing and I look forward to 
hopefully having the opportunity to participate.
    The Chairman. Senator Donnelly.

             OPENING STATEMENT OF SENATOR DONNELLY

    Senator Donnelly. I am happy to participate in this and 
ready to listen to our witnesses.
    The Chairman. Okay. And I, too, and without objection, my 
opening statement will be entered into the record.
    [The prepared statement of Chairman Nelson follows:]
    [GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
    
    The Chairman. I think it is worth noting that only 29 
percent report having a living will that states what their 
wishes are in end-of-life care, and that was one of the reasons 
I had a little bit to do with when Ron Wyden and I were doing, 
in the Finance Committee, the health care bill, of getting in 
there where there would be a consultation on advance 
directives. And what we got in the bill was that that was going 
to occur on the first consultation with regard to Medicare, 
when a person became eligible for Medicare. But since then, we 
have tried to get CMS to put the advance care planning as a 
part of an annual consultation and CMS removed it. We also want 
to get the Department of HHS to update its research on advance 
directives.
    So, we have a star-spangled board here of witnesses to talk 
to us, and first, we are going to hear from Jim Towey. He 
served in official positions. He has been on the staff of 
Senator Bob Graham. He served as the Director of the White 
House Office of Faith-Based and Community Initiatives. He has 
been the president of a small Catholic college in Pennsylvania. 
He is now the President of Ave Maria University, which is near 
Naples, Florida. He is a Floridian and, in the fairness of 
disclosure, he is one of my dear personal friends who uniquely 
brings to this discussion today the creation of an advance 
directive called Five Wishes, which is distributed around the 
country.
    We also have Harriet Warshaw. She is the Executive Director 
of The Conversation Project. It is dedicated to helping people 
talk about their wishes for end-of-life care.
    And then we have, as Senator Wyden has already introduced, 
Amy Vandenbroucke, Executive Director of the National Physician 
Orders for Life-Sustaining Treatment Paradigm Task Force. And 
so you bring another unique perspective.
    And then we have Gloria Ramsey, a Registered Nurse, an 
attorney. Dr. Ramsey is recognized nationally for her 
leadership in the areas of end-of-life care, health 
disparities, working with vulnerable populations, particularly 
African Americans and disabilities. Dr. Ramsey, instead of 
reading a prepared statement, I would appreciate it, after you 
listen to the other three testimonies, which will all be of 
about five minutes in length, if you would comment on what you 
have heard and provide your expertise as a nurse and a medical 
researcher.
    And we have been joined by the very happy and smiling 
senior Senator from Massachusetts.
    [Laughter.]
    Senator Warren. Yes.
    The Chairman. Senator Warren, would you like to make a 
statement, and we are ready to start with our witnesses.

              OPENING STATEMENT OF SENATOR WARREN

    Senator Warren. Thank you very much. I appreciate it, and I 
apologize for being late. We have activities, and I am going to 
have to excuse myself before we are all through. This is also 
Senator Cowan's last day and he will be making his remarks from 
the floor----
    The Chairman. Yes.
    Senator Warren [continuing]. So I will be joining him.
    But I do want to thank you and I want to thank Ranking 
Member Collins for scheduling this hearing and for reopening 
the conversation about advanced planning for medical treatment.
    Too often in today's health care system, medical care is 
focused on treating a disease, not on helping an individual 
patient. It used to be that a family or town doctor would treat 
a person for most of their lives for any medical issue. People 
and their doctors built up strong bonds over time and 
physicians knew their patients as unique individuals.
    Advancement in science and medicine gradually caused more 
and more doctors to begin specializing and only treating 
certain diseases or certain parts of the body, and now, 
according to the CDC, only 56 percent of office visits are to a 
primary care doctor. Patients, especially seniors, see several 
specialty doctors each year that focus on different aspects of 
the individual's clinical needs.
    So, we are slowly gaining evidence that coordination among 
doctors giving specialized care can improve a patient's quality 
of life and keep people healthy longer. I am proud that 
Medicare demonstrations like the Care Management Program at 
Massachusetts General Hospital are contributing to this 
evidence and improving our outcomes for seniors. Through the 
Affordable Care Act, we are encouraging even more coordinated 
care through medical homes and Accountable Care Organizations.
    But in all of the talk about improving coordination and 
quality in health care, I think we have missed something 
vitally important, something we used to know way back when we 
had only one town doctor. Patients need to be treated like 
whole people, people with loved ones and families, people with 
dignity and values, not like a collection of parts and 
problems. Somehow, we need to make sure that people are still 
being heard in medicine.
    So I am looking forward to the testimony of our witnesses 
today, hearing about the tools that we have available to help 
patients participate in medical decision making along with 
their physicians and their loved ones, and about what stands in 
our way so we can begin to work through the barriers and ensure 
that our seniors' voices are being heard.
    I want to thank you all, and again, thank you, Mr. 
Chairman.
    The Chairman. Thank you, Senator Warren.
    Senator Ayotte, we are already teed up, ready to go, but we 
want to hear any comments that you have prior to their 
testimony.
    Senator Ayotte. I will just wait for the questions. Thank 
you very much for this hearing.
    The Chairman. Yes, ma'am.
    Okay. Mr. Towey.

 STATEMENT OF H. JAMES TOWEY, FOUNDER, AGING WITH DIGNITY, AND 
         PRESIDENT, AVE MARIA UNIVERSITY, AVE MARIA, FL

    Mr. Towey. Thank you, Mr. Chairman and members of the 
committee. It is an honor to be here before you. I am happy to 
be the warm-up act for this distinguished panel, and it is also 
good to be back working here in the Senate after working for 
Senator Hatfield seven years. I was here when the Hart Office 
Building opened, so for me to be here before the Aging 
Committee is also appropriate. It is holding up better than I 
am.
    [Laughter.]
    But getting old or becoming ill is not a curse. It is part 
of life, with its own unique blessings and demands, and people 
should not dread old age. But why do so many? In part, I think 
it is because our health care system has turned dying into a 
medical moment and has many who are ill feel powerless, as 
though they are objects on some health care conveyor belt. So 
dying in America is too often characterized by poor pain 
management, loneliness, and spiritual starvation.
    From the beginning, Aging with Dignity was an advocate for 
consumers and individuals, particularly the disabled and the 
poor, who had the most at stake, arguably, when it comes to 
preserving their fragile human dignity. From the day in October 
1998 when the late Eunice Kennedy Shriver and I launched Five 
Wishes, I have witnessed firsthand the need for people to have 
advance directives and also their reluctance to engage in 
discussions with family members and medical personnel about 
their wishes during times of serious illness.
    So I would like to turn to the topic of advance care 
planning first by citing some of my thoughts on how it came 
historically. Of course, when it started with Living Wills, 
very few used them and they were written in language that was 
beyond their reach, often by lawyers and individuals with 
graduate educations. And so you saw that this led to the 
Patient Self-Determination Act, which was a very important act 
of Congress in 1990 and placed the primary role of decision 
making with the patient and his or her designees.
    Over the past 15 years or so, advance care planning 
policies generally improved in ways strengthening patient 
rights, and I think Five Wishes has been part of that 
nationally. When I began this project with Five Wishes, there 
were 17 States that required you to use a mandatory form, and 
now there are only eight States, and Charlie Sabatino here from 
the American Bar Association has been a real leader in that 
movement. But what has often happened seems to fly in the face 
of the Patient Self-Determination Act and what happens with the 
protection of patient wishes.
    So I think that while we have seen progress with advance 
care planning, we are also seeing novel improvements and novel 
challenges. Certainly, POLST has a lot of promise, and I 
commend the work of my colleague here in advancing POLST, 
because unlike advance care directives, POLST does not require 
interpretation. It is an actionable medical order. And I think 
that that is great. I think for you to have a physician order 
in place during times of serious illness is important. And I 
think that we also have to be very mindful that if you have 
POLST used in situations other than when individuals might be 
in their last year of life, you could run into differing 
opinions on its usefulness, especially whether a patient's 
family members were consulted or not, because I think there is 
a lack of consensus on how far upstream POLST can be used and 
should be used and whether there are other concerns that would 
be of importance to Congress.
    So I am going to raise, simply, five points really quickly 
on POLST. I think that the order should clearly note it is 
intended for people diagnosed with a life-threatening illness 
that could lead to their death within the next year. That is 
how POLST began. I think it is important to keep it moored to 
that.
    I think the order should include space to describe 
qualifying conditions and diagnosis, so if the patient is seen 
also by another physician in the future, it is easier to 
determine the qualifying conditions and the wishes of the 
patient.
    I think that the order should note who discussed this with 
the patient.
    I think, also, POLST should not deny the rights of health 
care surrogates and the individual's right to designate an 
individual to speak for them when they cannot speak for 
themselves.
    And, of course, it should not be effective indefinitely.
    Finally, I would like to simply say to this committee that 
I applaud your leadership, Mr. Chairman. Back in 2005, when you 
first sponsored legislation to add advance care planning as one 
of the items discussed in the ``Welcome to Medicare'' visit, 
and I urge your continued efforts and success. We know that 
this can become a real flash point in the public square. It 
happened with the Affordable Care Act. It could happen again if 
there is not a thoughtful discussion like we are seeing today 
by this committee.
    Finally, I would just like to simply say in the way of 
recommendations that I hope that you consider national 
legislation to affirm the Patient Self-Determination Act, that 
you make advance care planning consultations reimbursable, that 
you members lead by example and have yourselves and your family 
members and staff members availed the opportunity to do advance 
care planning. I am happy to provide Five Wishes. You will not 
have to disclose it on a gift form. We give them away free when 
needed. And, also, I am hoping that as POLST is developed and 
further integrated in our health care systems, that it is done 
in a way that stays true to why it was introduced in the first 
place, which I think was a necessary improvement on helping 
families get the kind of end-of-life care they want in a care 
setting.
    So with that and my time up, I want to simply thank you for 
this opportunity to come before this committee and to 
participate in this discussion.
    [The prepared statement of Mr. Towey follows:]
    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT] 
    
    The Chairman. Thank you, Mr. Towey.
    Ms. Warshaw.

     STATEMENT OF HARRIET WARSHAW, EXECUTIVE DIRECTOR, THE 
                      CONVERSATION PROJECT

    Ms. Warshaw. Thank you. And on behalf of Ellen Goodman, who 
unfortunately cannot be here because she is in Barcelona today 
at an international health care conference, and our Board of 
Directors, I would like to extend our appreciation to the 
committee for inviting us here today.
    The Conversation Project is a national public engagement 
campaign dedicated to helping people talk about their wishes 
for end-of-life care. We have a simple but audacious goal, to 
assure that everyone's end-of-life wishes are expressed and 
honored.
    The Conversation Project grew out of Ellen's personal 
experience with her mother's journey through the health care 
system. It was a journey that Ellen was not prepared for, 
filled with many decisions about what kind of care her mother 
would need since her mother was no longer able to make these 
decisions for herself. Ellen was very close with her mom. They 
talked about everything. But the one conversation they never 
had was how her mother wanted to live at the end of her life.
    After her mother had experienced what Ellen would call a 
``hard death,'' leaving Ellen filled with uncertainty about 
what her mom might have wanted, Ellen began telling her story 
to her friends. To her surprise, she learned that others had 
similar experiences with their loved ones. Ellen, being Ellen, 
she looked for a path to see how she could improve the way 
others experienced the death of a loved one.
    Ellen reached out to a group of colleagues and concerned 
media, clergy, medical professionals, to share stories of good 
deaths and hard deaths within their own circle of friends. They 
realized that the difference between the two experiences often 
hinges on whether or not they had had the conversation. The 
consensus from this group was that although some progress had 
been made in the field of end-of-life care over the past 30 
years, major change would not occur until there was pressure 
from the outside pushing the health care system, respectively, 
to be receptive to and solicitous of people's wishes for their 
end-of-life care.
    From this discussion, The Conversation Project emerged as a 
grassroots engagement campaign to change the cultural norm from 
not having the conversation to having the conversation around 
the kitchen table with our loved ones long before there is a 
medical crisis. To do this, we have embarked on a three-part 
strategy using traditional and new media, collecting stories of 
good deaths and hard deaths to share with others, and to make 
The Conversation Starter Kit tool accessible to people where 
they live, where they work, and where they pray.
    Our hope is that our work will give people the confidence 
and courage to have the conversation about their end-of-life 
wishes, first with their families and then with their health 
care providers, long before there is a health care crisis.
    We have been overwhelmed by the public's response to The 
Conversation Project. Since our official launch in August of 
2012, our story has been covered by 200 news outlets, including 
the New York Times, the Wall Street Journal, ABC News and World 
Report. Our innovative Web site has been visited by over 
100,000 people in the first six months, and strikingly, almost 
50 percent of those who have visited the site have downloaded 
the starter kit and other tools. We have been asked to speak in 
front of national, State, and local organizations, businesses, 
and health care communities.
    What we have learned during the past ten months is that we 
have touched a tender nerve within the American public. There 
is a deep desire to have end-of-life conversations with our 
loved ones, but people do not know how to begin. This 
disconnect is consistent with the findings of the California 
Health Care Foundation, which found that 60 percent of people 
say that making sure that their family is not burdened by the 
tough decisions is extremely important. Yet, 56 percent have 
not communicated their end-of-life wishes to their loved ones.
    We know that in Massachusetts, 17 percent of people have 
had end-of-life conversations with their physician. And in 
California, only seven percent. As a result, while 70 percent 
of people say they prefer to die at home, surrounded by their 
loved ones, the reality is that 70 percent are spending their 
last days in hospitals and other health care facilities.
    We have learned that our goal that people expressing end-
of-life wishes resonates with communities across the country. 
We have been welcomed into California, into Contra Costa 
County, to work with medical societies, businesses, faith-based 
communities, to make the county conversation ready. We have 
been asked to convene and speak at educational forums in 
Boulder, Colorado, that was started by residents and in a forum 
that had over 300 residents in attendance. We have spoken at 
day-long forums at Wake Forest University sponsored by the 
Medical School, the Divinity School, and the Center for 
Bioethics. And there is now a pipeline of communities from the 
State of Rhode Island, to Kennebunkport, Maine, to Akron, Ohio, 
to Chicago, Reno, Tucson, Portland, Oregon, and the State of 
Hawaii, all who want to initiate The Conversation Project.
    One thing is for sure. No matter where we live, no matter 
what side of the political aisle one sits on, we have, each of 
us, experienced, or will experience, the death of a loved one 
as well as our own mortality. The question for each of us is 
what we want for our care towards the end of our life and how 
we are going to assure that the wishes of our loved ones and 
ourselves will be expressed and honored. We believe that the 
best place to start is around the kitchen table, having an 
honest and open conversation with those we love. Our simple 
transformative goal is that we will be asking, have you had the 
conversation, and hear in response a resounding, ``Yes.''
    And so, our question to each of you here today, 
respectfully, is have you had the conversation? Thank you.
    [The prepared statement of Ms. Warshaw follows:]
    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT] 
    
    The Chairman. I have had part of the conversation.
    [Laughter.]
    Ms. Warshaw. We will help you with the other part.
    The Chairman. And, having gone through the loss of a couple 
of family members recently, I cannot say enough good things 
about hospice and especially when you try to create the 
environment that you are speaking about----
    Ms. Warshaw. Absolutely.
    The Chairman [continuing]. At home, surrounded by the 
family and the loved ones, and that, in what is otherwise a 
painful experience, is a positive experience.
    Ms. Vandenbroucke.

 STATEMENT OF AMY VANDENBROUCKE, EXECUTIVE DIRECTOR, NATIONAL 
PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT PARADIGM PROGRAM

    Ms. Vandenbroucke. Thank you. Even though he is gone, I 
want to thank Senator Wyden for his kind introduction.
    Chairman Nelson, Ranking Member Collins, and other 
distinguished members of the committee, thank you so much for 
having me here today. My charge is to describe the POLST 
Program to you.
    As you have heard, POLST stands for Physician Orders for 
Life-Sustaining Treatment and is a specific set of medical 
orders that document the treatments that a patient does or does 
not want in the time of a medical crisis. As detailed in my 
written testimony, it provides orders to health care 
professionals, including emergency personnel, on resuscitation, 
other medical interventions, antibiotics, and artificially 
administered nutrition.
    The POLST Program is not just a specific set of orders on a 
form. It is also an approach to end-of-life care planning based 
on conversations between patients, health care providers, and 
loved ones. It was created over 20 years ago by a multi-
professional task force convened by the Center for Ethics at 
Oregon Health and Science University in Portland, Oregon. POLST 
was subsequently adopted by Oregon's medical profession, 
ensuring that health care professionals could honor the 
treatment preferences of patients diagnosed with serious 
advanced illness, regardless of where the patient is during an 
emergency.
    The POLST Paradigm Program has developed through grassroots 
approach in some States, like Oregon, and through State 
legislation and regulation in others. In 2004, the National 
POLST Paradigm Task Force was created to develop a set of 
standards for POLST Programs. The Task Force is charged with 
endorsing programs when they have proven that their program 
falls within those standards. Currently, we have 16 States that 
have endorsed programs and we have 25 States that are working 
towards this endorsement.
    The Task Force also mentors States developing POLST 
Programs, States like Maine, Senator Collins. Thanks to the 
Retirement Research Foundation, Maine's coalition received a 
three-year grant to develop their POLST Program in accordance 
with the national standards, and my predecessor, now me, has 
received funding to formally mentor Maine. And through this, 
they have been able to develop their program, and this year, I 
will be helping them submit their application for endorsement. 
There are several other States that also receive funding, such 
as Florida, Pennsylvania, Rhode Island, New York, West 
Virginia, Connecticut, Tennessee, Illinois, New Hampshire, and 
others.
    In Mr. Towey's testimony, you did hear about advance 
directives, and in my written testimony, I describe the detail 
between--the differences between POLST and advance directives, 
but I want to highlight two here.
    First is the target patient population. While all competent 
adults should be encouraged to have advance directives, the 
POLST form is not appropriate for everybody. It is only when a 
patient is diagnosed with a serious advanced illness that a 
POLST form would be appropriate. For those patients, they are 
able to consider their specific diagnosis and prognosis and 
their goals of care and then complete a POLST form so that they 
have standing orders for emergent or future medical care 
reflecting those goals.
    The second is that this is a medical order signed by a 
health care professional giving orders. POLST forms turn the 
wishes expressed in an advance directive into action as a 
medical order.
    Max's story, which I included in the written testimony, is 
a great example of when an advance directive is not enough. He 
had clearly documented his decisions on the treatments he did 
not want to receive when he was diagnosed with progressive 
heart condition in an advance directive, but when he collapsed 
as a result of that condition, the EMTs responding were unable 
to honor his wishes because they did not have a medical order. 
And for EMTs, when they are responding in a medical emergency 
in Oregon, they need to have medical orders. Otherwise, they 
have to do everything possible to attempt to save a person's 
life. And the POLST form can convey those orders. Max's death 
would have been very different if the responding EMTs had had 
the POLST orders to direct his care. He would have been allowed 
to have the natural, peaceful death that he so greatly desired, 
and his family would have had the comfort of knowing that his 
wishes were honored and respected.
    There is still work to be done. As you likely know, 
electronic medical record systems can be complicated, and even 
though a record can be in the system, it may not be easily 
located. Although POLST is primarily a State effort, we invite 
the committee's endorsement of a uniform standard for 
electronic medical record systems to ensure that documents that 
are needed at the time of an emergency to honor a patient's 
autonomy are easily found, ideally with a single click.
    Four final observations about POLST. First, comfort 
measures are always provided. In fact, research now shows that 
a patient with a DNR and a POLST form is likely to receive more 
palliative care than those with just a DNR.
    Second, POLST is voluntary. The POLST--the National Task 
Force does not endorse or encourage programs where the 
completion of the POLST form is mandatory.
    Third, POLST can be easily modified or revoked. The Oregon 
registry shows that about 15 percent of all POLST forms 
submitted each month is a modification of a previous form. So 
as a patient's disease progresses, their care goals can change 
and their treatment preferences can change, so it is 
fundamental to the POLST Program that we allow for that.
    And, finally, this is the patient's voice. Either the 
patient is the one having the conversation with the health care 
professional filling out the form or their surrogate is. So if 
the patient's voice is not heard, the surrogate is the person 
to look to. By encouraging the advance care planning 
conversation between health care professionals and patients and 
by completing a POLST form when it is appropriate and desired, 
we are respecting patient autonomy.
    I appreciate the opportunity to be with you today. Thank 
you.
    [The prepared statement of Ms. Vandenbroucke follows:]
    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT] 
    
    The Chairman. Thank you, Ms. Vandenbroucke.
    All right, Professor. You have heard the testimony of the 
previous witnesses. What do you think? How would you advise us?

    STATEMENT OF GLORIA RAMSEY, R.N., ASSOCIATE PROFESSOR, 
      UNIFORMED SERVICES UNIVERSITY OF THE HEALTH SCIENCES

    Ms. Ramsey. Great. Thank you. Thank you, Mr. Chairman, 
Ranking Member Collins, and distinguished members of the 
committee. I am really pleased to have the opportunity to speak 
with you this afternoon and to comment on the testimony that we 
have heard thus far, and also to have an opportunity to share 
with you some of the research that I have been engaged.
    I would like to begin with the comments or the testimony 
from Mr. Towey. At the onset, we heard about individuals who 
are poor, who are disabled, and who are powerless. It is the 
vulnerable populations that I would like to underscore that 
have not been a part of the discourse over the years. Although 
the PSDA was passed in 1992, as Mr. Towey said, not all 
communities have been a part of the conversation.
    I would also like to comment with Ms. Warshaw and The 
Conversation Project and the idea that this is a grassroots 
effort, and believe me, change comes from the grassroots 
community, that the cultural norm needs to change, that these 
conversations need to happen where we work, where we live, and 
absolutely where we pray. My research largely embraces the 
faith community, and I will share that in a bit.
    Also, I would like to underscore that there is a deep 
desire to have the conversation, but individuals, even health 
care professionals, need assistance. They need help in how to 
begin the conversation, and that is equally important. And 
having it at kitchen tables sounds like a really great place, 
before the crisis, before the medical event when everyone then 
is uncertain about what is afoot.
    And, lastly, Ms. Vandenbroucke's comments about the POLST 
and really introducing yet another opportunity to engage the 
patient and the patient's voice.
    And it is all of these efforts that, I submit, are 
important for us as we renew the conversations that we have 
been charged with today, and we thank you for the opportunity 
to revisit some of what has occurred.
    And to that end, I would like to say that the views 
expressed are personal and do not reflect those of the 
Uniformed Services University of the Health Sciences or the 
Department of Defense.
    As I think about my own work, certainly starting in 1992 
with the U.S. Supreme Court's decision in Cruzan v. Director, 
Missouri Department of Health, and the Congress' passage of the 
PSDA, this was a wonderful opportunity, if you will, to begin 
to inform patients of their rights to accept and refuse medical 
and surgical interventions.
    Today, we have heard statistics about the number of persons 
who are completing those, and I will certainly say to you, 
those who come from racial and ethnic diverse backgrounds as 
well as persons with disabilities, those numbers are far less.
    And since passage of these laws and in recent years, recent 
studies report on the differences in decision making among 
racial and ethnic populations and patients with disabilities, 
and generally speaking, patients facing end-of-life care have 
the need to feel a sense of control, to have their pain 
appropriately assessed and managed, and as Senator Collins 
said, to be treated with respect and as a whole person.
    Barriers to quality end-of-life care for African Americans 
stem from mistrust of the health care system, inability to 
access health care, inability to identify with providers, and 
the lack of financial resources, especially as death 
approaches. In my own research, we found significant 
differences between whites', non-Hispanic whites', and blacks' 
completion of advance directives and even their willingness to 
engage in health care planning conversations. Many feel that if 
they complete directives, that would be tantamount to an 
abandonment of care.
    So there is much to be done as we think about the health 
disparities that we see across our country, and yet the 
opportunity for us to really begin to elicit the patients' 
perceptions, beliefs, and values.
    In conclusion, African Americans and other racially and 
ethnically diverse populations' shared experiences, beliefs, 
and values influence their willingness to participate in 
advance care planning discussions, and advance care planning is 
an urgent public health concern and I thank you for renewing 
the conversation.
    [The prepared statement of Ms. Ramsey follows:]
    The Chairman. Excellent discussion.
    Senator Collins.
    Senator Collins. Thank you, Mr. Chairman.
    Mr. Towey, I think that most people believe that advance 
directives are used solely to give direction on the kind of 
care that a patient does not want to receive. But, in fact, 
they also, as your Five Wishes document shows, can be used to 
direct the kind of care that they do want to receive. How do we 
make sure that as health care providers discuss these issues 
with their patients, that they do so in a neutral way and not 
bias the decision one way or the other?
    I heard part of an NPR story this week that talked about 
how the way the question is asked can greatly influence the 
choice that is made, such as if you ask, do you want us to 
perform CPR if it means cracking open your ribs as we do so, 
you get a different response than if you put it in a different 
way.
    Mr. Towey. Well, Senator, I think you have identified one 
of the real defects with how Living Wills were promoted up 
until very recently. They were biased in favor of only 
communicating declination. I do not want this treatment. I do 
not want that treatment. Well, this has been remedied. As you 
said, Five Wishes now has let people choose to say, I do want 
in this circumstance of if I am seriously ill.
    I think beyond that, though, you get to the heart of the 
question, which is trust. There is such a mismatch. Many 
individuals have a crisis going on in their health before they 
even have these discussions. Then they are dealing with health 
care professionals that are speaking a language they do not 
understand. They are facing a health care system that has 
become increasingly more complicated. As a result, a lot of 
distrust exists. People feel mismatched and inadequate to the 
conversation.
    I think the nice thing about The Conversation Project and 
what we have been doing in Five Wishes since 1996 is pushing it 
away from the emergency room and into the living room, the 
kitchen, and so forth. But there is this trust element, which 
is why a health care surrogate's role is very important. And so 
often, if you do not have the conversation, then your surrogate 
is in as much of the dark as the health care provider.
    So I think that a good place to start, I think, would be 
for Congress to communicate to States in some way that they 
should not require individuals to fill out a form which says, I 
do not want care in--in other words, a form biased the way you 
describe. Currently, there are eight States that require you to 
fill out a State form. It is usually long. It is usually 
impossible to decipher by all but the most educated. And it is 
often of little or no use to health care providers.
    So a good start would say for the States to understand that 
these old vestiges of the past, where you have these antiquated 
Living Will statutes, give way to the more modern approach that 
lets people put their wishes in their own words. Let them have 
conversations, reduce it in writing, and communicate it to a 
health care surrogate, their health care professionals. That is 
the preferred route to go.
    Senator Collins. Thank you.
    Ms. Vandenbroucke, I was fascinated and touched by the 
story of Max that is in your testimony because it is so 
disturbing because he ended up getting care that was completely 
inconsistent with his wishes, and yet he had done everything 
possible to prevent that. You say in your testimony that EMTs 
have no choice but to do everything possible to save a life 
unless they have medical orders to the contrary, and I gather 
an advance directive is not considered to be a medical order, 
because you mentioned that his wife shows up with the advance 
directive and it does not do any good.
    I guess what I do not understand is how would the POLST 
system solve that? I mean, you are not going to be carrying the 
orders with you.
    Ms. Vandenbroucke. Well, you could.
    Senator Collins. But that is pretty unlikely----
    Ms. Vandenbroucke. It is unlikely, I absolutely agree. So, 
you are right. To reiterate, the POLST is a medical order. It 
is not an advance directive, so advance directives are signed 
by individuals. A health care provider may never see it until 
there is a time of crisis and someone happens to be able to 
locate it at the time. But a POLST is a medical order signed by 
a health care professional.
    So in Max's situation, if his wife had shown up, and this 
is our bright pink form, with it, then they would have said, 
okay, yes. We have got these medical orders. It is signed by a 
professional, a health care professional, and we are able to do 
what this form says to do or not to do.
    In Oregon, we do have a registry, so there are also certain 
situations where emergency personnel show up, and in this 
situation, if Max had completed a form but no one had it with 
them, which would be reasonable, they could say, he has got a 
POLST form, and the emergency service people would call the 
registry and the registry would say, yes, this is the 
individual. Okay, he did not want CPR. He did not want this. 
Or, yes, he wants CPR. He wants that. And they would be able to 
act on those orders in the field at that time.
    Senator Collins. Thank you.
    The Chairman. Senator Warner.
    Senator Warner. Thank you, Mr. Chairman.
    I want to follow up with Senator Collins. I think, is this 
not again one of the reasons why, though, we need some 
incentives so that that POLST order can translate across the 
State line? Could you speak to that, Ms. Vandenbroucke.
    Ms. Vandenbroucke. Yes. So, we do have some States that 
have put reciprocity for POLST orders into action, or into 
their State legislation. Some States just do it from a 
grassroots perspective. I know recently in Oregon, there was an 
Oregonian that had been vacationing in Wyoming and they 
happened to have their POLST form with them and they had an 
emergency, and the Wyoming folks ended up calling the Oregon 
registry, confirming that this was, in fact, a medical order, 
and they were able to treat the individual based on their POLST 
form at that moment.
    But it is certainly something that we are looking to, 
especially with the endorsed States. If you are a State that is 
endorsed by POLST, you know that the form has certain elements 
and certain things are not included on it, and so there is some 
standardization across those. So it is pretty easy from a 
reciprocity standpoint between those States, but as we are 
building in other States, it is something that we are working 
on.
    Senator Warner. I would like to ask all of the witnesses, 
perhaps starting with Professor Ramsey, but just one of the 
things that we have been looking at in terms of--I think it is 
great, you have got to start the conversation, maybe in one 
setting, but then you have to then have that conversation with 
medical professionals that then gets translated into this 
medical order.
    The thing that we have kind of drilled down on, and 
starting with Professor Ramsey, but anybody could comment on, 
is that we found even within the kind of reimbursement that 
Medicare does right now, there is an availability to actually 
have a consultive team so that it is not just simply--it may be 
a nurse, it may be a social worker, it may be a doctor, so that 
there is some ability to help this kind of translation issue. 
Do you want to talk about that notion?
    Ms. Ramsey. Yes, sir. That is important, because one of the 
things we found in our work is that individuals from the 
community would like to see individuals from the community, 
individuals who they perceive understand their preferences, 
their values, their social-economic status, their spiritual 
beliefs, and the like.
    African Americans do complete advance directives. We use 
the Five Wishes document in our research, and more than 80 
percent of our persons have completed those. So to get a health 
care team who absolutely understands and appreciates the 
diversity and the inclusivity and also the cultural nuances and 
language considerations, as well, is important to really fully 
engage, and the Five Wishes document, again, was certainly one 
of those that was very successful in our community and that we 
encourage our individuals to go to our local health care 
facilities with the document and the team is educated to know 
that it is a legally binding document and it is respected.
    Senator Warner. I might just want to add, too, that one of 
the things we are looking at adding in our team is that ability 
to have that faith leader as part of that team, as well.
    Does anybody else want to comment on that?
    Mr. Towey. Yes, if I could just add to that, because I 
think it is not only just an issue of trust, where individuals 
want to believe that their wishes are going to be followed. 
There is a concern if the conversation is being held with 
individuals who have a financial stake in their decision. So if 
an individual is saying, I want the works until the very last 
breath, there is a financial dimension to that communication 
versus one that says, no, I do not want my sternum cracked. 
Please do not do this.
    And so as you move upstream, and you have, I think, very 
correctly said, Senator Warner, that you have got to go beyond 
just filling out a document and having a remote conversation. 
You actually have to have actionable plans, which is what I 
think POLST came into existence to remedy and has done 
effectively.
    Beyond that, you have got to have parties involved that are 
disinterested, that do not have a stake, that have no skin in 
that game financially. Otherwise, there is a feeling that 
people have that if they do not give the right answer, they may 
have trouble in their health care setting if they are feeling 
pressured to say, I do not want care. So that has been our 
experience. I am not sure how to remedy it, but again, I think 
the more communication is in place with the health care knowing 
exactly what that individual wants, I think it helps them 
further upstream when there is a crisis.
    Senator Warner. But it is kind--and I want to hear from Ms. 
Warshaw--but it is a little bit of you have both examples. You 
have the example of someone feeling pressured maybe to kind of 
check too many boxes, but I will tell you, you also hear lots 
and lots from hospital systems where they will acknowledge 
where the absent relative who has not seen Grandma for months 
comes in feeling guilty and says, do it all. Disregard the wish 
of the patient. And trying to get that right is a real balance.
    Ms. Warshaw.
    Ms. Warshaw. Thank you. I just wanted to comment, also, 
about the need to help our health professional staff feel 
comfortable having these conversations. What we have seen is 
they are humans, just like us, and find it challenging to have 
these conversations. And so we have been working with care 
managers, physicians, asking them to take off their 
professional hat, go through the starter kit, and experience 
what it is like and how challenging it is to have these 
conversations so that they then can lend that empathetic 
understanding and be ready to receive this discussion with 
their patients, because so few doctors feel comfortable 
starting the conversation, so----
    Senator Warner. Thank you, Mr. Chairman.
    The Chairman. Senator Warren.
    Senator Warren. Thank you, Mr. Chairman.
    So, Ms. Warshaw, I appreciate your question, and you asked, 
have we had the conversation. We should lead by example. I just 
want to take this chance to say publicly, yes, I have had the 
conversation. I had it twice.
    My Aunt Bea started in about 40 years before she died--she 
died at 98--having the conversation. She was a shy, self-
effacing woman, but she was determined that I would know what 
she wanted when the time came. And when we lost my mother very 
suddenly, my father after that insisted on having the 
conversation. Both of them said, ``Betsy, we will be depending 
on you.''
    And I just want to say about the conversation, I had the 
confidence that I was doing what Aunt Bea wanted, what my Daddy 
wanted. It was their final gift to me, and that is what really 
mattered about the conversation.
    Ms. Warshaw. I have had it with my two adult children, 
young adult, but adult children, and it was a hard conversation 
to have because nobody wants to have this. No one wants to 
think of their parents' mortality. But, to me, it is a gift to 
them. It is unburdening making such difficult decisions. I 
never want them to have any regrets, and I had wonderful role 
models with my parents. Both of them have passed away, but I 
knew exactly what they wanted, and the last period, their end 
of their life, was a joy to be with both of them.
    Senator Warren. Yes. So thank you. Thank you, and I 
encourage everyone to have the conversation.
    But what this discussion shows are the many benefits that 
we have from treating the whole patient, and the quality of 
life both for the patient and for the loved ones, and how we 
should strengthen our ways for getting more information here. 
And we have heard some great tools today. But the question I 
want to ask is how we can improve our Medicare program to make 
certain that seniors are being treated with dignity and 
respect, receiving the quality health care that is consistent 
with their individual values. You know, there is a lot of power 
in Medicare and I just want to start there, if we can.
    Dr. Ramsey, could you comment on that, please.
    Ms. Ramsey. Great. Thank you. Again, in terms of my 
personal opinion, in terms of what the Federal Government has 
done, looking back in 1992 with the PSDA in terms of what were 
some of the opportunities that this particular legislation has 
provided, we have heard today that there is--Senator Warner is 
working on proposed legislation. And so I think that each of 
these that will have teeth, if you will, that actually 
expresses some guidance, would be enormously helpful for us. I 
think there was a lot of good that has come out of the PSDA. 
Was it--did we complete our total objectives? Not so much, but 
certainly, we are long on our way. So I think that in terms of 
using prior laws, examples such as that particular Federal law, 
will help us as you look forward with the current legislation.
    Senator Warren. Thank you.
    Mr. Towey, would you like to add anything on that.
    Mr. Towey. Yes, Senator. It is the reimbursement system. So 
you have got to incent good practices, and so there should be 
review of how hospitals and care facilities and care providers 
are doing with urging individuals to do advance care planning 
and have discussions. Certainly, funding hospice in ways that 
gets them an earlier encounter, an earlier discussion with 
patients. They often are only brought in at the very end. There 
is a bias--it has been documented by the Dartmouth research 
that there is a bias toward hospitalization and curative care 
to the point where individuals, had they known what they were 
going to face the next 90 days, would not have tried radiation 
a third time. But, often, this is not communicated. It is 
simply a physician saying, we are going to try this.
    So these conversations are best, I think, also incented in 
medical schools, where you start training the next generation 
of care providers to understand that if you are really going to 
be in the caring professions, you cannot simply treat them as 
an object for your health care practice, that you have to help 
them understand, here is what is ahead if you choose this 
option versus this option. Often, the patient has no access to 
a physician, and so then the discussion is held by a social 
worker who has no idea who the individual is and it is broken 
down from the very beginning because their caseloads are too 
great and they are not funded any more by Medicare.
    So I think that a good way for Medicare to leverage its 
money is to incent good practices and also for us to be doing 
more with the medical schools to inform them about good pain 
management and earlier referral to hospice and better 
information for families and patients.
    Senator Warren. Good. Well, I see my time is up, but I just 
want to say, thank you all. Thank you for the work that you do 
every day. And thank you again, Mr. Chairman, for reopening 
this conversation for all of us.
    The Chairman. Thank you, Senator.
    Senator Whitehouse.
    Senator Whitehouse. Thank you, Chairman. Let me join the 
rest of the panel in thanking you and in thanking the Ranking 
Member for having yet another hearing on this issue and 
continuing to persist for results. This is so important.
    Ms. Vandenbroucke has Max. I had Martha, and it was the 
exact same situation. She was a very, very proud lady. She was 
determined that she was going to go out on her own terms, and 
she had her advance directives and everything else laid out, 
but she passed away in Virginia. And at the time, if you did 
not have a bracelet around your wrist that showed that you had 
signed up for this very specific program, the exact same thing 
happened. The EMTs came. She could have had her doctor, her 
lawyer, her priest, her family, her advance directive all right 
there saying no and the EMT would have said, well, tough bounce 
to all of you. We are doing what we are doing and we do not 
care. And they were legally obligated to do so. It is not 
because they are cold-hearted people. So fixing that, I think, 
is very important.
    And we are working on MOLST in Rhode Island. Maureen Glynn, 
who used to work for me in the Attorney General's office, is 
leading that charge and is doing a terrific job and we are 
trying to get it through the Health Department right now. I 
want to thank particularly our Catholic Diocese, which has been 
extremely productive and helpful in the MOLST. Ms. 
Vandenbroucke says POLST for Physician. We call it MOLST for 
Medical, but it is the same idea. The Catholic Church has been 
very, very productive in this discussion, has been very, very 
helpful, and in a State as Catholic as mine, it makes a big, 
big difference.
    And so keep doing what you are doing. If there is more that 
we can do to push this forward, give us advice, I am directly 
involved in that process in Rhode Island and I would love to be 
helpful in any way that your organization can give us advice.
    And thank you for reminding us, Ms. Warshaw, about the 
conversation. It is important to have. And I will reassure 
people that I have had it on both ends and I do not think it is 
that bad of a conversation. Kind of screwing up your guts to 
raise the subject is the hard part. Once you start talking 
about it, it tends to bring a cone of trust and of affection 
and of family reciprocal loyalty out in people.
    And so I do not think it is a conversation that we should 
be the least bit scared of or dread. In fact, every time I have 
talked to somebody about the conversation, when they are done 
with it, they feel way better than beforehand. It is not 
something where you walk away from it thinking, oh, that was a 
real ordeal. It is the exact opposite of that. It is a good 
thing for families to have that conversation.
    We are in an environment here where we can observe that 
most people who die are old people. Most old people are on 
Medicare. Medicare will have a lot to do with how these 
decisions get made at the end of life. And we are also in a 
political environment in which something as vile and pernicious 
as the death panel notion was able to actually get traction and 
frighten people that there might actually be such a thing.
    So what do each of you think would be the simplest, 
clearest, and most hobgoblin-proof improvements that we could 
make to Medicare, either by changing the law or by pushing the 
administration to make administrative changes, that would be a 
step forward in this direction, maybe not the final step 
forward, but a doable, clear, simple, non-controversial step 
forward? And quickly, because my time is running out.
    Ms. Warshaw. So, since we are at the beginning of the food 
chain on this discussion and we are really interested in a 
whole cultural change, not just some----
    Senator Whitehouse. We cannot do cultural change that 
quickly, with a simple change. What can we do that is simple 
and clear? What can we push for? What is the first step?
    Ms. Warshaw. Well, then I would suggest working with health 
systems to put the starter kit in every primary care 
physician's office.
    Senator Whitehouse. Okay. Ms. Vandenbroucke.
    Ms. Vandenbroucke. I would say--I know it is not 
necessarily non-controversial, but promoting that conversation. 
As Mr. Towey said earlier, the advance directives in some 
States, you need a Ph.D. to understand what they are saying and 
what they are asking for, and really, unless you have the 
conversation with a health care provider about what your 
options are, you are going to be believing that if you have 
CPR, or if you need CPR, it is going to be a couple of presses 
on your chest, you are going to be fine, because TV shows 75 
percent of people that have CPR on TV walk away, when the 
reality is it is more like eight percent. And so people just do 
not even understand simple concepts, much less----
    Senator Whitehouse. We rewrote ours in Rhode Island because 
they are usually done when people are drafting their wills.
    Ms. Vandenbroucke. Yes.
    Senator Whitehouse. So they are written by lawyers and for 
lawyers. Well, lawyers are not going to read them. Doctors are 
going to read them, and doctors speak a different language than 
lawyers, so----
    Ms. Vandenbroucke. Exactly.
    Senator Whitehouse [continuing]. We changed it from 
lawyerese to doctorese, and that helped at least a little bit.
    My time is expired, so let me just ask if you could reflect 
on my question as to what simple, clear steps would be that 
would be a good step forward, that are achievable in an 
environment in which the notion of a death panel might actually 
take footing, and just get back to us, because I do think 
that----
    Senator Warner. Share it with all of us.
    Senator Whitehouse [continuing]. We very much want to work 
together on this issue. This is a truly bipartisan issue and a 
truly human and humane issue, and I appreciate the wonderful 
work that you are all doing to advance the cause.
    The Chairman. I always learn something from Senator 
Whitehouse, and today, I learned this beautiful turn of a 
phrase. Cone of trust.
    Senator Whitehouse. Modeled on Maxwell Smart's cone of 
silence.
    [Laughter.]
    The Chairman. Senator Ayotte.
    Senator Ayotte. Thank you, Mr. Chairman.
    I appreciate all of the witnesses being here on such an 
important topic, and I know that there was a question asked to 
some extent when I was out of the room on this, but what I have 
heard from some of my concerns from constituents is that they 
have a situation where they either have two homes or they are 
traveling to visit a family member. Where they have an advance 
directive, they are worried that if--I have heard some, 
frankly, really bad stories about people who had advance 
directives, but one State did not respect the advance directive 
of another. And I know that some States do have some 
reciprocity, but what is it, in your view, that we could help 
make sure, not even--that States would respect the decisions 
and making sure that it is--the advance directive is drafted in 
such a way that there is some universal recognition?
    If you could help me--I know you may have already answered 
this, but this is an important issue that I think if we are 
going to respect people's wishes in this regard, you know, we 
are a mobile society and there are too many of these stories 
and we never know when something is going to strike someone.
    Mr. Towey. Well, Senator, I think you have raised a very 
important issue, which is being able to carry your--nobody 
travels with their advance directive unless they are really on 
top of things. So Five Wishes is a national document used in 42 
States. Eight States, of course, have language that requires 
you--and their statutes require you to use their form. But you 
still have the Patient Self-Determination Act, which provides 
individuals this right as a Federal right. It has not been 
tested in court. Who wants to be a test case?
    But it is our view, as an advocate from the consumer 
standpoint, without any stake in the health care financing 
system, it is our view that they should be able to write it on 
a paper bag, their wishes, if they wanted to. It is not an 
effective way. It is not a good way. But it brings out the 
rights of individuals to communicate their wishes the way they 
would like.
    So I think what the Federal Government could do is renew 
its point that the Patient Self-Determination right supercedes 
State statutes that are limiting an individual's exercise of 
their Patient Self-Determination right, at least as it applies 
to Medicare and Medicaid. You are paying for it. Why could we 
not see these States that have these mandatory forms recognize 
if they do not get with the better practices, they will lose 
their Federal funding? But until you do that, you will have 
this fractured system in place.
    Now, people with Five Wishes, fortunately, can travel to 
most States. But a lot of places, you run into horror stories, 
where individuals did not have their advance directive and a 
State will say, well, we do not honor what you have. You did 
not fill out the State form.
    Senator Ayotte. No, I appreciate that. I do not know if 
anyone else has anything to add on that.
    One of the issues is we have talked a lot about, certainly, 
this issue with regard to end-of-life decisions when it comes 
to the elderly, which is, I think, very important to all of us. 
I am blessed to have a 97-year-old Grandfather and a 96-year-
old Memay [phonetic] that are still with us, and, frankly, the 
sharpest people in the family when it comes to what is 
happening in the nation's capital.
    But I think that one of the issues, when we think about it, 
this is not just an issue of impacting the elderly--we are here 
in the Aging Committee--but how do we start this conversation 
with people throughout their life, even younger people? You do 
not want to think about, obviously, when you are young, 
anything happening to you, but tragedies can happen at any 
moment in life and so this is sort of part of the life 
continuum.
    And so I just wanted to get your thoughts on--it is kind of 
like we are getting to the point where you are older and we are 
going to have this conversation, and it almost becomes a harder 
conversation because we are not incorporating that for some 
younger people in younger situations that can find themselves, 
obviously--none of us wants to think about this, but all of us 
want to make sure that our wishes are respected.
    Ms. Warshaw. So, one of the ways that The Conversation 
Project is addressing this is recognizing that we need to start 
the discussion with people where they work, where they live, 
and where they pray. And so we have been working with employers 
to have this conversation with their employees, no matter what 
age they are. We have brought together in Boston 20 faith-based 
leaders, actually, two weeks after the Marathon bombing, and 
had an extraordinary working session with them. Together, we 
are beginning to develop a faith-based strategy for Boston that 
encompasses every faith being represented and universally, not 
by age, bringing it to the faith-based communities.
    So, I think that you are right. As we learned in Boston, 
you get up in the morning and you do not know what is going to 
happen. And so we are trying to bring this concept, and that is 
why I say it is a cultural change, and we are hoping that we 
promote the day after Thanksgiving as ``Talk Turkey'' day with 
your family, when everybody is around, to have the 
conversation.
    So, if the government with Medicare would like to be a 
partner in this media campaign with us, we would love to have 
you as our partner.
    Senator Ayotte. Thank you. I appreciate you all being here.
    The Chairman. Having been whipsawed on death panels and 
having gone through the experience of a Floridian, Terri 
Schiavo, I would think that younger people would want to go 
ahead and complete an advance directive. But, of course, we see 
the opposite in the statistics that you have given us.
    What do you think, is it human just ``put off until a later 
day'' kind of attitudes that is preventing us from having these 
discussions, and also of actually executing advance directives? 
Tell us what you think.
    Ms. Vandenbroucke. I heard about a book recently, and it 
was written by a young woman, and it was something like The 
Things That I Didn't Know I Needed to Know as an Adult. And I 
think with advance directives, at least in my experience, being 
somewhat still young, people just do not know and they do not 
know the laws.
    I was in-house counsel at Oregon Health and Science 
University and one of the things that surprised a number of 
people is that the Oregon law, once you hit 18, there is no one 
that is legally designated to speak on your behalf. They expect 
you to fill out an advance directive to say, this is the person 
that can speak for you if you are incapacitated, and people 
just do not know that and they are not thinking about it.
    So, trying to get people aware of truly what can happen to 
them is, I think, something that can be an eye-opener, having a 
good story and just kind of communicating it that way.
    Mr. Towey. Senator, not only taking it to the workplace, 
and also, when you talk to young people--I am at Ave Maria 
University--the last thing they are thinking about is their 
mortality. So, one of the things that we have done with young 
people that has been helpful is to say, if you want to be a 
good son or daughter, have you talked to your parents about 
what they want so you can be there for them when they need you 
the most? And that has been effective to a point, because they 
do not mind getting in the face of their parents.
    And the real problem, when you look at the numbers in the 
Medicare and the Baby Boomer population, that group is going to 
live forever. Mick Jagger is going to be holding rock concerts 
until he has to have both hips replaced, and so they are, 
thankfully, joyfully forever young. And so trying to get the 
Baby Boomers engaged, I think, is even a greater, more 
important challenge for Congress, because they are the ones 
that are the consumers and so many of them do not have this.
    And they have also--I put in my testimony, their profile 
health-wise is terrible. They are failing relative to previous 
generations on their health. So they are going to be needing 
more expensive care, more frequent care, and yet they have not 
even communicated their wishes. So we find that getting the 
kids to go to their parents now has been an effective strategy.
    But I think, lastly, is the faith community. They do not 
have any skin in the game, so they are able to speak with a 
voice that is unbiased, that is not tainted. There is no 
perception of a conflict of interest. Certainly, getting the 
leadership of our faith communities engaged in this discussion 
would be very helpful.
    The Chairman. And how do you take the information from a 
form such as Five Wishes and get this transferred over to Ms. 
Vandenbroucke's form that actually has the doctor executing?
    Mr. Towey. Well, in States that have POLST, you certainly 
want to communicate to individuals, particularly if they are 
sick when they are filling this out, that they should know 
about POLST. We, of course, talk about DNR, but that is not 
enough. POLST is much more comprehensive.
    So what you would like to have, Senator, happen, is first, 
the advance care document filled out. That is your legal right. 
The discussion with your health care surrogate who knows 
exactly what you want, including issues related to POLST. And 
then, third, in your medical discussion with the physician, it 
is the physician, too, who should be bringing up the POLST 
discussion. Do you have an advance care directive? And have you 
had any discussion about POLST? So, hopefully, that is how the 
sequence would work.
    Ms. Vandenbroucke. And I would just add that the next step 
is then putting it into the medical record in a way that it is 
easily found at the time of an emergency, because if you have 
the forms and we cannot find them, then they do not have much 
value.
    The Chairman. And, of course, if we can get HHS to require 
this in the annual Medicare visit, that is just going to all 
the more add to the conversation.
    Does anybody know why HHS would not put that in? Is it 
money?
    Mr. Towey. I can speculate that I think they are fighting 
about getting anywhere near the death panel issue again.
    The Chairman. Ah.
    Mr. Towey. And so I think until--if ObamaCare is fully 
implemented, I think there is a fear that it will get derailed. 
The discussion will get diverted. So I think there may have 
been a reluctance on them to engage. That is just my 
speculation. Gloria or others may have a different point of 
view.
    Ms. Vandenbroucke. No, I agree with that. That is one of 
the grassroots efforts, I think, of most States that are trying 
to develop or enact the POLST Program, is reaching out to 
health care professional facilities who have EMRs, like Epic, 
and get them to modify it in such a way that you have a header 
like the one that is on the last page of my written testimony, 
where you can easily click on it. But they are having to do 
that more on a case-by-case basis.
    The Chairman. Ms. Warshaw.
    Ms. Warshaw. Yes. I would just add that if we require our 
physicians to do this, we also need to educate them, because 
otherwise, it will just be a checklist. There will be a check-
off and there will not be a really robust conversation. And it 
is the subtleties of that robust conversation that influences 
whether your real wishes are implemented.
    Ms. Ramsey. And I would add, in addition to the physicians, 
to the Advance Practice Nurses, the Doctors of Nursing 
Practice, the other health care professionals.
    I did want to comment in terms of the earlier comment about 
engagement of younger persons. One of the things that we are 
really seeing is that when you think about health disparities, 
the burden and incidence of disease among minority populations, 
whether it is cancer, cardiovascular disease, and the like, the 
burden of disease is taking its toll. And so the idea about why 
these conversations are particularly important is one that 
really has helped to upstream the conversation.
    So albeit the Karen Ann Quinlans and the Nancy Cruzans of 
the world were much younger, what we are finding with our work, 
because of the burden of disease and the lack of access to 
health care and the like, that we are seeing individuals who 
are living with chronic diseases and that we are forced--or at 
least it allows an opportunity to have a conversation, which is 
really providing access in a way that we have not seen in the 
past.
    The Chairman. Senator Collins.
    Senator Collins. Thank you, Mr. Chairman.
    As I have been listening about the debate on the discussion 
today, I thought of the fact that filling out a POLST order, 
for example, is very different at age 18, which was the point 
that Mr. Towey was making, than it is at my age or my parents' 
age. And I do not know that we should be encouraging college 
students to fill out advance directives and POLST orders. I 
mean, I could easily fill this out now, but when I was at age 
20, my answers would probably be totally different than they 
are now, and Mr. Towey, I think, was trying to get at that 
point when he talked about when this should be used. And, Ms. 
Vandenbroucke, you did say it was in most cases when someone 
would have less than a year to live or something like that.
    But talk to me about this issue and when we start, Mr. 
Towey, and go down. I mean, should this conversation that Ms. 
Warshaw has talked about, Professor Ramsey has talked about--is 
not this conversation a different outcome depending on how old 
you are?
    Mr. Towey. Yes, Senator. I do think that individuals that 
are older, it is a more immediate question and they have a 
different perspective, different values. And so one of the 
things that we see in advance care planning is individuals 
change their Living Wills all the time, or they go to their 
health care agent and they say, ``I have changed my mind.''
    I just saw a friend that had a bad experience. I do not 
want that to happen to me. And so you will see changes, which 
is why I believe POLST has great promise, provided that it is 
used and kind of limited to the situations for which it was 
created, which is in the face of imminent health difficulty, 
serious illness, so that it is not seven years later that 
something you said after a car accident is being applied to you 
now that you have had a minor stroke.
    So we urge there to be time limits on POLST for when it is 
written, and also the physician who is having that discussion 
with the patient, that there be documentation so you know who 
did it, so that there is a verification that this was done with 
the free, voluntary assent of the individual, because as Gloria 
has mentioned, many groups feel pressured, coerced, and 
inadequate to those conversations with a physician.
    Senator Collins. Thank you.
    Ms. Warshaw.
    Ms. Warshaw. So, as I said, we are at the beginning of this 
discussion, and so what we encourage people to do is to speak 
with their loved ones about what their values are and what they 
want their end-of-life to feel like or look like, not 
specifically what tests or what type of health care they want.
    So it will change over time, and I think if you had asked 
Ellen what the perfect name for our organization would have 
been, she would have said ``The Conversations Project,'' but it 
is too difficult to say. So we recognize that this is just the 
beginning and it is a lifelong conversation.
    Senator Collins. Ms. Vandenbroucke.
    Ms. Vandenbroucke. Yes, so you are correct that the POLST 
form really is for the end-of-life and the focus is, earlier on 
in life, I think, completing that advance directive. And I 
think it is worth having the conversation early on because you 
just do not know what is going to happen. And as long as you 
have the conversation, even if the form is never filled out, 
you have a general sense of what your family member would have 
wanted.
    With respect to the POLST form, it is almost--I know that 
some States view it as a medical error if you fill it out too 
soon. So, one, this is a form that is initiated by a health 
care provider, not the individual.
    And, two, if a health care provider gave me a POLST form 
and said, ``Fill it out,'' or said, ``I want to fill out this 
form for you,'' that is completely inappropriate because this 
is putting a medical order into place that--well, one, if they 
are mandating it, that is a problem, but it is setting up for 
medical orders that would not be appropriate, because I am 
young, I am healthy, and I would want full treatments 
regardless, and that is what the law already provides for. So 
this is--it is something that would be reported to a board for 
a serious infraction if people are misusing this form.
    Senator Collins. Ms. Ramsey.
    Ms. Ramsey. And I would only add that for the younger 
individuals, advance care planning is a process. It is not a 
one-shot deal. And so the idea about lots of your values, your 
attitudes, and your preference about other things are actually 
also addressed as we are having the advance care planning 
conversation. As my community member said, ``If I were to step 
outside and get struck by a car, who would that person be that 
I would want to be there at my side to be the advocate for me, 
to be the navigator for me while I am hospitalized and 
receiving care?''
    So I think that, certainly, the end of life is along that 
continuum, but I think there are lots of advantages for 
engaging early, and that is what we have seen.
    Senator Collins. Ms. Ramsey, just one final question, 
because you have just touched on an issue I wanted to raise, 
and that is I have heard so many stories and have seen friends 
where family members cannot agree and have very different views 
on what should be done and the patient is too ill to give 
direction and that conversation never took place. So you have 
made the very good point about making sure that there is 
someone who can make the decisions for you, but should that 
always be a family member necessarily?
    Ms. Ramsey. Not necessarily, and I think that when I use 
the Five Wishes document in our work, one of the things that is 
expressly stated in the form, that it need not be a family 
member, because sometimes family members are not the best 
person. And so that is an important conversation, that it need 
not be your spouse or your oldest child, but rather it should 
be someone who is going to be able to articulate your 
preferences, is comfortable with that, and really is available 
to you, among some other criteria that would be helpful to 
consider. But, no, not necessarily that it has to be a family 
member.
    Senator Collins. Thank you, Mr. Chairman. Thank you.
    The Chairman. Senator Whitehouse, you have a request.
    Senator Whitehouse. Mr. Chairman, I just wanted to ask 
unanimous consent that the opening statement I had intended to 
give if I had been here on time be included in the record as if 
I were.
    [The prepared statement of Senator Whitehouse follows:]
    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT] 
    
    The Chairman. Indeed, without objection.
    Are you in your cone of silence?
    [Laughter.]
    Senator Whitehouse. No, I am prepared to yield to Senator 
Blumenthal.
    The Chairman. Senator Blumenthal.
    Senator Blumenthal. Thank you, Senator Whitehouse, and 
thank you, Mr. Chairman.
    I wonder--for the panel, I appreciate all of you being here 
on this very profoundly important topic. Connecticut, as you 
know, has taken a number of steps in this direction, and while 
I was Attorney General of the State, I supported those efforts, 
options for patients to provide instructions or to appoint 
someone to provide instructions to physicians, family members, 
and others about care choices. We thought this was especially 
important, and Connecticut helped to lead, when patients are 
unable to express themselves on these issues, and planning and 
preparation, and the term ``conversation'' was not quite as 
much in vogue as it has become today, so we thought there ought 
to be talks and discussions and family meetings and as much 
frank, good talk about this as possible.
    But there are also a lot of legal complexities surrounding 
these issues, and I have looked over some of the examples 
provided for options for end-of-life planning and advance 
directive and the Five Wishes form and so forth. I wonder, what 
options are available to enable people to better understand the 
governing law of their States, whether that is something that 
needs addressing. Obviously, people are not going to want to 
pay a lawyer, understandably, to do this for them, and most 
cannot afford a lawyer. So what options are there for 
furthering public understanding in the face of what they may 
think are legal complexities?
    Mr. Towey. Senator, it certainly has been the province of 
law firms often to provide a Living Will as part of their 
estate planning practice, and that has been somewhat effective, 
although they typically use the State form, so there is not 
really a useful document in play to begin with.
    But worse than that is the fact that most individuals who 
are poor, disabled, have no access to an attorney in the first 
place, and so we have been out there promoting the use of Five 
Wishes, make it--I think it is a dollar each for 25 or more--
for faith communities, for financial planners, but also, you 
know, parish nurses, other individuals that are in the 
community itself, the aging centers, to be able to go upstream, 
reach individuals.
    And then our document is meant to be educative. It is meant 
to kind of help them understand what their rights are. You have 
passed, or Congress has passed the Patient Self-Determination 
Act. No one knows what is in it. It has been over 20 years. So 
that is why one of my recommendations was a renewed voice by 
Congress on the importance of advance care planning.
    I think when you deal with elderly in nursing homes, 
Senator, typically, when I go to a nursing home, I always ask 
at the front desk, how many people here have no visitors ever, 
and you get over half is the answer. So when you start talking 
about advance care planning for that population, you run into a 
whole different set of circumstances. Then you layer on 
depression, which is not uncommon for individuals as they 
approach death.
    So as we educate families about their rights, one of the 
most important rights is to identify individuals who can be 
health care surrogates, maybe someone from their church, maybe 
the local community, that comes into a care setting like that 
and says, I am going to be helpful and befriend and visit those 
individuals. That would help them exercise their right.
    Senator Blumenthal. Thank you.
    Any other responses?
    Ms. Ramsey. One professional organization, the National 
Hospice and Palliative Care Organization, has a myriad of 
resources that are consumer-friendly in their initiative called 
Caring Conversations, and that has been one of the places that 
I have been able to, certainly, advise patients and families to 
also consult with. Not only is the directives from each of the 
States, whatever type of directive that State recognizes, 
whether it is a Living Will or a Durable Power of Attorney for 
Health Care, but they are both there, as well as instructions.
    And what they have also developed is a series of documents, 
pamphlets, that are really developed for consumers that is 
helpful for individuals to begin the conversation as well as to 
help them understand, well, what is life-sustaining treatment, 
you know, what does that look like, and the like. So that would 
be one of the examples that I would offer.
    Senator Blumenthal. And I note that a number of the experts 
in this area have said that physicians are sometimes reluctant 
to address these issues, for whatever reason. Are you satisfied 
that physicians are, in effect, accepting the need to raise the 
issue proactively with their patients and persuade them to make 
some of these decisions and enlist others to do so?
    Ms. Ramsey. I think in terms of medical schools across the 
country, nursing schools across the country, it is certainly 
something that we are getting better at. I think, as Ms. 
Warshaw said earlier, physicians and providers are waiting for 
patients and patients are waiting for providers, and that 
disconnect there really does give rise to a delay in time that 
is important to really begin the conversation. So in terms from 
an academic perspective, medical schools and nursing schools 
are really eliciting this content in terms of--into the content 
of the curriculum--excuse me--so that we can begin to help 
individuals role play in how to begin the conversation, how do 
you break bad news so that it is not as difficult as it is.
    And, lastly, it is another opportunity why the consumers, 
the lay individuals, need to be informed, so that they can be 
supportive in bringing the conversation up, as well.
    Ms. Warshaw. I think we are experiencing a conspiracy of 
silence about discussing end-of-life issues, both from the 
medical community and from the public at large. And just like a 
generation ago when my parents would not use the word 
``cancer,'' or we would not talk about gay rights, or there was 
no such term as ``designated driver,'' there has to be a 
cultural shift recognizing that this is a necessary adult 
responsibility of all of us to talk about what kind of care we 
want at our end of our life, because death is not natural 
anymore with the enhanced technologies that we have.
    I would like to also add that the Institute for Health Care 
Improvement, where The Conversation is housed--which we are 
very appreciative of--is in the process of developing a 
curriculum in their open school program, which means it is 
online and free, all about The Conversation Project and how to 
begin having this conversation, and that is geared for 
interdisciplinary health care teams.
    Senator Blumenthal. Well, I thank you very much. My time 
has expired, but I think the term ``conspiracy of silence'' is 
a very strong one, and I do not dispute it because I have no 
factual basis to dispute it. But I would have hoped that we 
would move beyond that, but I gather this panel feels that we 
have not and that is a very important call to action for all of 
us who are involved, which really means all of us, because we 
are all going to be there and all of us will have relatives, 
loved ones, friends, neighbors, who will be there, as well.
    So, I thank you very, very much, and thank you, Senator 
Nelson and Senator Collins, for having this hearing.
    The Chairman. Thank you, Senator. You are a very valuable 
member of this committee and you bring a great perspective as a 
former Attorney General.
    Ms. Ramsey, minorities--it was stated here that there are 
disparities in the minority communities about advance 
directives. Expand on that a little bit.
    Ms. Ramsey. One of the things that we have found is that--I 
think it was stated at the onset that most times, we think of 
completion of advance directives as to refuse intervention. And 
for some, refusal is not what they are interested in. The idea 
is that, for many, there have not been access to health care, 
access to services, and that, finally, we do have access and 
now you want us to limit it or refuse it. Completing advance 
directives sometimes is perceived as being that you are going 
to be abandoned, that the care that you are getting, you are no 
longer going to get any of the care. And so that is part of the 
notion or the background about minorities and completion of 
advance directives.
    Similarly, about eight percent of minorities utilize 
hospice services. That is a very small number as compared to 
the majority at 82 percent. That eight percent has been pretty 
static over--too long. And so the idea about individuals having 
access and knowledge about these services and to know that you 
can accept or you can refuse them, but at no time will you be 
abandoned and that your pain will be appropriately assessed and 
managed.
    The Chairman. You have been involved, Professor, in the 
Veterans Advisory Council on End-of-Life Care, and you know 
about the concerns about how advance care planning has been 
handled with our veterans. In your experience, tell us about 
your work with the Advisory Council and how these issues are 
raised with veterans.
    Ms. Ramsey. Yes, sir. In terms of that particular Advisory 
Council, and recently, I completed an end-of-life nursing 
education consortium training for veterans, the idea is that 
many individuals who have served our country are not 
necessarily dying in places like the VA or where individuals 
are trained in caring for veterans. And so the idea was that if 
individuals who served our country are in other acute care 
settings across the country, in hospices, that what are some of 
the things that would be important for providers to know as 
they transition, as they prepare for dying.
    And so it has been important for us to recognize that there 
are some particular considerations, if you will, for persons 
who have served and what we can do to make their dying 
experience meaningful and valuable, as we have done for others, 
but also appreciating that they have served our country.
    The Chairman. Thank you.
    Ms. Vandenbroucke, explain for the record the difference 
between the DNR form and the POLST form.
    Ms. Vandenbroucke. Thank you. The DNR form focuses just on 
resuscitation and the POLST form goes further and most States, 
it is a Section B, by saying, if you do not have an issue with 
resuscitation, what are the other things that you want at the 
end of life?
    So there are generally three options. You want comfort 
measures only, meaning that you want to allow natural death. 
You do not want to do anything to prolong your life. Limited 
additional interventions, which means that you would like 
things done. You might be in the ICU for a little bit, but you 
will get antibiotics and other treatments. Or full treatment, 
which is you want everything.
    And so this form goes a little bit further in asking those 
types of questions, whereas a DNR is generally just the one.
    The Chairman. Well, we have heard that sometimes patients 
with the traditional DNR, they get less treatment geared to the 
patient's comfort, palliative care, but studies have shown that 
patients with a DNR order on a POLST form get more palliative 
care. Is that true?
    Ms. Vandenbroucke. Yes. There was a study that was done by 
Susan Hickman that was published in 2010 in the Journal of the 
American Geriatric Society that spoke to this, and she was 
essentially saying that POLST forms were highly associated with 
people making decisions about what they wanted at the end of 
life. And so when you had more orders that had greater 
specificity, you had a greater sense that this is what the 
patient wanted, whereas with DNR, generally, when people are 
seeing it, that that was just kind of treated as a way of just 
not providing as much care. They were interpreting it that the 
patient wanted less aggressive treatment done, when that may 
not have, in fact, been the case. And with a POLST, that was 
additional information about the level of care that the patient 
wanted in addition to the DNR.
    The Chairman. In the case where some physicians fill out 
the POLST form without involving the patient in the discussion 
of their goals and wishes, is there any evidence that any of 
you all know that this, in fact, has happened? It is not 
supposed to.
    Ms. Vandenbroucke. It is not supposed to, and I do not have 
any evidence of it. Most of the States do require signatures of 
the patient or the surrogate. Oregon happens to be one of the 
unique ones where we are just recommending that the signature 
occur. But the expectation from the program is that this 
conversation is occurring. The POLST, as I said at the 
beginning, is not just a form, it is a conversation, and the 
form is only as good as that conversation.
    The Chairman. Thank you very much.
    Professor Ramsey, I want to go back to the previous 
question. There was the suggestion in the VA that they were 
creating death panels. What do you know about that?
    Ms. Ramsey. I do not, sir.
    The Chairman. Okay. I want you to ask about that the next 
time you are in the Council.
    Mr. Towey.
    Mr. Towey. Mr. Chairman, as you know, back in 2009, when 
the VA floated a document called ``My Life, My Choices,'' there 
was controversy around it. The concern for the poor and the 
handicapped and others that feel mismatched to begin with is 
when a huge provider of services is also very anxiously trying 
to discuss it, it can be--to discuss the issue, advance care 
planning, they could have a serious conflict of interest, 
because they also are under tremendous budgetary pressure to 
save money.
    That does not mean we should be funding every last bit of 
care every individual wants, and, in fact, most people do not 
even want that care at the end of life. They do not. If you ask 
people, do they want their last three days spent that way, they 
would say no. And so part of advance care planning is for them 
to say, I want it in this situation, but I do not want it in 
this situation, the same as POLST would allow.
    The problem when the health care community directly, such 
as VA, or secondary, such as a reimbursement scheme of Medicare 
or Medicaid, when they are leading the discussion, people are 
suspicious. They are frightened that what you are really trying 
to do is cut costs, and they are saying what is really better 
for you is to go straight to palliative care when, in fact, 
your treatment plan in front of you, curative care, could lead 
to a recovery. So that is why I think the VA has to proceed 
very cautiously when it seeks to promote end-of-life 
discussions.
    The Chairman. And, of course, the subject of this entire 
discussion, advance directives, could alleviate any of these 
questions about whether or not there are going to be death 
panels. And, of course, if it is appropriately authenticated 
and signed with an order, with, as you said, Ms. Vandenbroucke, 
the patient's signature on there, as well, then I think it 
starts to alleviate a lot of the concern.
    Senator Collins.
    Senator Collins. Thank you, Mr. Chairman.
    I do not have any more questions for this panel, but I want 
to thank each member for your very informed, insightful, and 
intelligent discussion of this issue. Both the Chairman and I 
are truly committed on this issue, and I think it is really sad 
when this important discussion degenerates into slogans and 
demagoguery, such as death panels, when it is so important to 
each and every one of us. And I commend all of you for the work 
that you have done, your research, the Five Wishes Program, the 
other initiatives to elevate the discussion, which it deserves.
    So, thank you very much, and Mr. Chairman, thank you for 
your longstanding interest and work in this issue.
    The Chairman. And with those very kind words, we both 
extend a hearty thank you to all of you for an excellent 
discussion.
    The meeting is adjourned.
    [Whereupon, at 3:53 p.m., the committee was adjourned.]

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